Tena koutou katoa, te karapinepine mai, te karapunipuni mai ki te waharoa o Te Hui. Ko Mihingarangi tenei, e mihi atu nei, nau mai, tahuti mai ra. Welcome to The Hui, Maori current affairs for all New Zealanders. Coming up this morning ` Diagnosed with lung cancer, told he had just months to live. Jason Guttenbeil could now have years thanks to a wonder drug. It's saving my life, you know. I have hope. There's a catch, though. He's paying tens of thousands of dollars for a treatment that other cancer sufferers receive for free. It's more than I earn a month, so how am I going to pay for this when I can't even work? Then we meet the Maori boy who's hoping his stars align with a job at NASA. I'm gonna go an work for them, whether I'm doing stuff in the science lab, helping them make or control or even build a spaceship. (ROCKET WHOOSHES) Karahuihui mai. Lung cancer kills more New Zelanders than any other carcinoma. While many pass it off as just a smokers' cancer, an increasing amount of non-smokers are also developing the disease. Jason Guttenbeil is one of these people, but he's lucky enough to be kept alive by a wonder drug. The catch is it's free for some cancer sufferers but not for him. Rewa Harriman has more. Jason guttenbeil is a man living on borrowed time. He has stage four lung cancer, and it's incurable. Cancer touches everybody. In some way, you know somebody, but you never knew it was going to be so close to home. He may be dying, but he's found a lifeline in the form of a drug called Keytruda. It's saving my life, you know. I have hope. But this drug comes at a cost. It's not funded for lung cancer, and Maori, being the highest sufferers in New Zealand, are dying too soon. If the intention of the Treaty is for Maori to have equal access to things such as health, then I think we're failing tangata whenua in New Zealand. Jason's cancer journey started after being diagnosed with pneumonia in April. I was sent into hospital, and I got progressively worse. They started monitoring my heart. What they found was that I had 1.2 litres of fluid around my heart. When I was discharged, I thought, 'OK, I dodged a bullet there. Things are going to be all right again.' Two weeks after that scare, Jason was back at hospital, hearing the unthinkable. And that's when they said, 'Unfortunately, you have cancer,' And that was the fluid from my lungs, the fluid around my heart, both were cancerous. Yeah, that was one of the hardest days that I remember. How long did the doctor give you? Did they give you a timeframe? Yeah, they said it's going to be palliative care. And it's going to be nine months to 12 months. If there was no treatment, it was 6-8 weeks. And hearing that? Yeah, saying, 'Man, am i going to make it until Christmas?' Having four kids aged from 5 to 17, I had too much to live for. It was hard for me to think about not being there for them, and I've got to fight. I've got a reason to live. I got too much to fight for. It's a day his wife Trish will never forget. It was awful. It was real doom and gloom. Getting the diagnosis and then walking out of that room 10 minutes later, and you're just feeling numb and think you're in a movie and it's not real. But it was very real. Jason, who had never been a smoker, deteriorated quickly. Now the fun-loving active dad had only months to live. It's such an aggressive disease. A horrible disease, lung cancer. It happened so quickly, his deterioration. It was really hard to see him like that, not able to talk sometimes or breathe properly. I thought that I was watching my husband die and his was it. After two rounds of chemotherapy, Jason needed a miracle. His oncologist told him about Keytruda, a targeted treatment for lung cancer. There's drugs which are available, but they're not funded, so you have to pay. And so, it was like, 'How much is it?' It costs thousands of dollars, which is pretty daunting, when you look at it and you go, 'Wow, that more than I earn a month' How am I going to pay for this when I can't even work? The cost of this new treatment plan is $14,000 every three weeks. Fortunately, through the efforts of whanau and friends, enough funds were raised to start the treatment. They raised $60,000 or $70,000 to get me started. The results I currently have from being on Keytruda for six weeks, I feel like a new man. And they give me the energy to be able to feel like I'm normal again. For me, it's been a wonder drug. Pharmac continues to give Keytruda a low priority.... The drug Keytruda hit the news headlines 18 months ago. It's results with treating melanoma were so successful, public pressure piled on the government to fund the drug. An 11,000-signature petition was delivered to Parliament today. In September last year, they finally caved, funding Keytruda for melanoma sufferers but not lung cancer. Lung cancer kills four times as many people than melanoma skin cancer does. Philip Hope, the CEO of Lung Foundation NZ, says many lives could be prolonged if lung cancer had similar support. There are almost 500 lung cancer patients that have a great likelihood of responding to Keytruda. Is it fair that the people with enough money has access to treatment and the rest have to miss out? Unfortunately, this is a consequence of the system we have at the moment, which is flawed. We have less than 10% of people which are able to fund the treatments that's not currently in the public health system, so there is a huge inequity there. On the issue of inequality, the statistics show. (READS) And after diagnosis, it gets even worse. (READS) So, we know Maori are more likely to die from lung cancer, but we're six times less likely to develop melanoma, which is funded for Keytruda, so as it stands, this wonder drug remains out of reach for most Maori cancer sufferers. We know our Maori children, they need their mum and dad. We know our mokopuna need their grandparents. If the intention of the Treaty is for Maori to have equal rights and equal access to things such as health, then I think we're failing tangata whenua in New Zealand. While Maori are two and half times more likely to smoke than non-Maori, Philip says the assumption that lung cancer is self-inflicted can have dire consequences for sufferers. How damaging is that stigma? I've lost two of my whanau to lung cancer. One of them was a smoker. That stigma is very damaging. This person wasn't able to tell his family he had lung cancer because of the shame. Unfortunately, there are many people out there that are being diagnosed late simply because of the stigma, the association with smoking. I don't like smoking myself, but there's a lot people out there that are close to me who smoke, that I love, and if they got lung cancer, I'd want them to have the opportunity to get well and to have these drugs available. Lung cancer kills more people than breast cancer, prostate cancer and skin cancer combined. Keytruda is prolonging Jason's life, giving him more time with his loved ones. We thought you were gone. Here we are today. Man, it's all back. It's just like I'm... living again. Where we up to, Chris? Jason is feeling so much better after only three treatments, he's even gone back to work for a few hours a day. But life still revolves around treatment. Jason is paying thousands for his, but he wants to see everyone having access to Keytruda free of charge. It's gold standard treatment that I'm receiving now. I can't go anywhere else in the world and get better treatment. It's available here, and it's available now, so it has to be funded. It's sad to think that there are people out there with this awful disease dying from it, when we know there is a drug that can work really well. Pharmac say they are still considering whether they will fund Keytruda for particular types of lung cancer. They say it's unclear if it will increase how long people will live with end-stage lung cancer. We thank you, Lord, for the blessing that you've given upon the doctors and... It's not a silver bullet, but it's given Jason some more time, something he and his whanau could only dream of two months ago. It's given us way more hope, and we know that we've definitely got a lot more time than initially we were told. So, Keytruda's literally saving your life? It's saving my life, you know. I have hope. Before, I was hoping to get one Christmas with my family. Hopefully I can see many more. In a statement to The Hui, Pharmac said they acknowledge the special relationship that exists between the Crown and Maori and are committed to upholding the articles expressed through the principles of Te Tiriti o Waitangi, and information on the impact on Maori and their whanau is sought as part of each funding decision they make. Kei tua o nga whakatairanga. We discuss the demise of the Maori Party. Hoki mai ano. On Saturday night, Maori voters made a significant move away from an independent political voice, choosing to return the Labour Party. Te Pati Maori was a movement born from activism, following the introduction of Labour's foreshore and seabed legislation, but more recently some felt Te Pati Maori had become a vehicle for the elite. I spoke with Dr Moana Jackson and Annette Sykes. I began by asking Annette Sykes what she thought happened in Waiariki. I think everybody underestimated the mood for change. Three factors towards the end of the campaign emerged: Jacinda-mania. You cannot underestimate the impact of her influence on the youth vote. The second thing was the absence of the Maori Party on the ground at not the usual Maori events. Rugby, netball. And third thing is, as I've contemplated it, is that yes, people weren't happy with cosying up to National, but there had been some co-option going on by the Labour Party, who placed key leadership in Waiariki in the last three years. Michael Cullen has been assisting Tuwharetoa with their negotiations, and Michael Cullen, of course, is a member of one of the boards of the Tuhoe peoples, and he's quietly respected by them, so maybe there was signs of forgiveness because they put such a high-profile individual into our electorate, and I don't think we can underestimate his influence. And there was an expectation that Tamati would win Rotorua and Te Ururoa would win those other areas. When you looked at the booths, what did you see? There was a huge swing. Two things have helped there. Mana didn't stand a candidate, so the left vote only had one left person to think about if they could be persuaded to forgive Labour. That's the first thing. And I don't think a lot voted, too. Can I just say that? The low turnout in our electorate contributed to the outcome. Only 54% at this time have voted, so 46% didn't. Moana, the 46% that didn't vote, as Annette says, you've mentioned that too. Where did they go? What happened? Was it apathy? No, I think it's a disservice to our people to say that the low turnout is apathy. In research we did in association with the constitutional working group, a number of people were very clear about not voting and why they didn't vote. One large group said they didn't vote because Parliament could never be a rangitiratanga place. But an even larger group of the sampling of over 4000 Maori said that the parliamentary system was not the constitutional system sanctioned in the Treaty. And so, those people not voting was actually a positive statement. When you step back from what's happened in the last week, and you've been on the sidelines watching politics for a very long time, you've seen the rise and the fall of Maori parties and movements, was the Maori Party any different from, say, Mana Motuhake? We've had some really good people go in there and try to do the best for our people. Different parties have been formed, different blocks have been formed. And sadly, most of them come to a similar fate as the Maori Party as done. And I think the lesson in that not to denigrate those who are there or to denigrate those who oppose them, which has sadly happened, but to ask why is that happening, what is it about that system that, in the end, will not allow us to achieve mana motuhake. Annette, picking up on that denigration of voters and things, both the co-leaders immediately after the loss, they were firing their own shots, really, at Maori voters with statements like running back to the abuser, the battered woman. Were you surprised? Why do you think that reaction`? I was alarmed. I wasn't just surprised, because our people deserve respect, young and old, and people have given thought, and it was some tortured thought, because in the meetings I was going to, people right up to the Friday weren't sure how to split the votes. Everyone was talking split the vote. Metiria's demise was a huge influence too, where the party vote went, I think in Waiariki. I'm sure there's a rise in that. But to say some of the alarming things like we are going back to the abuser, I found that an unfortunate analogy. Te Ururoa Flavell talked about an independent Maori voice being lost, tino rangitiratanga, and that's what his party stood for. But when you look into that framework of the current system, Moana, is it even possible to have tino rangitiratanga within that? No, I don't think it is because it's a kawanatanga system. That kawanatanga sphere has become the only place where our people have been able to try and assert some ideas of mana motuhake and so on. But it's not designed to do that. It's designed to maintain colonising power, really, and amongst the many thing which I hope will come out of this election is a renewed conversation about the need for constitutional transformation, to look ahead to what the Treaty actually said. This month it will be 10 years since the raids on Tuhoe. And as that date comes around, how will you two reflect on it? My concern 10 years out is that there are two whanau that still have not had compensation. Payments were made to some of the Tuhoe tribal communities, but the Rameka family deserve immediate compensation, so I will be pushing that, and I've heard recently that the legal aid is still being paid off by the 19 I got off. So we need to be looking at some recompense to those individuals that, 10 years down the track, are paying legal aid accounts of something to the number of $5000. I think it would be wrong for anyone in the Labour Party to see the swing back by many Maori as a forgiving and forgetting. I think it's a challenge to them to make amends, to go some way to alleviating the harm that their policies from the foreshore to the Tuhoe raids and many other things caused, and to actually help Maori achieve rangitiratanga in a much more open-looking way. I think that's a challenge for those young, emerging politicians as well. I'll sit back and watch them with some interest. Moana Jackson and Annette Sykes. Stay with us. After the break, we meet a young Maori boy taking aim at the stars. With school holidays just beginning, many students are welcoming the break away from the classroom. But one Ngapuhi teenager loves school and studying so much, spending time away from school is no cause for celebration. Xander Pou has some astronomical ambitions to realise, and every bit of learning is going to help him on his mission. Ruwani Perera with Xander Pou's quest for the stars. He's a 16-year-old space nerd who's spellbound by stars. Stars are cool and they're weird, because the entire universe is made up from stars and stardust. All the elements came from stars, and they come in so many pretty colours. Xander Pou wants to explore outer space and find out more about what's out there. The universe is infinite and forever growing, so I feel like there has to be something out there. He knows what he wants. He's so young. He's only 16. He wanted to go to NASA. He loves all sorts of nerdy stuff. (LAUGHS) (LAUGHS) He loves it. We don't know that much about space. I just want to explore more, I guess. Xander's space odyssey began early on, as a 7-year-old kid at Takanini Primary School. We built this rocket ship. Like, I thought it was the coolest thing, because I just finished reading a book about stars and supernovas and nebulas and stuff. So I was like, 'Yo, this is going to be cool.' They had a mock 'We're going to space' scenario, and they built rockets. He was really disappointed at the end of that, because they were supposed to go to space, and he thought they were going to space! And we didn't go to space, because that's not the right rocket to get to space, apparently. Yeah. 'We were supposed to go to space, and we didn't.' And, 'That was dumb.' We're going to investigate at least one variable that affects the height reached by a rocket... Xander's still studying spacecrafts as a year 12 student at Auckland's Mt Albert Grammar school. (EPIC MUSIC) As part of his advanced physics class, they've built and launched their own rocket ships... that still haven't quite made it into space. I actually love school. I love showing up. Learning things, it's fun. It's not that bad. People, they don't enjoy school that much, but some people love it. I love it. And I like getting to hang out with my friends, getting to learn different things. I find it rewarding when you're learning something that's really really complicated. There's that sense of reward in it, when you finish an equation that's really confusing and hard. It's a good thing that he loves studying so much, because Xander has dreams of being an astrophysicist. I've got to admit, when you first told me you wanted to be an astrophysicist, I had no idea what you were talking about. Can you explain? They use physics, mainly they're a physicists, to look at the lifespan and the death of stars, nebulas, galaxies, basically planetary bodies. That's mostly their job. They also work with the engineers and stuff. So they'll be working together on trajectory and how you're going to get a spacecraft to space. What once may have been pie in the sky is now a very real possibility. (ROCKET WHOOSHES) In May, Rocket Lab's historic Electron launch off the Mahia Peninsula propelled New Zealand's space industry into orbit and onto NASA's radar. And that's pretty impressive. This tiny country is quite big in the rocket industry, and good on them for creating all these opportunities for Kiwi the children. Kiwi kids like Xander and his classmates, who were selected to go on the trip of a lifetime, travelling to the States for a space camp. The proper astronauts train in Houston, and they've got all the similar facilities in Houston, so what they basically did is create a place for the public to come and experience that. Xander's physics teacher Sarnia Slabbert took the group to the US Space and Rocket Centre in Huntsville, Alabama in July. (EPIC MUSIC) While you might think Houston is where all the action happens, this space academy offers a crash course in astronaut training and rocket design technology. The budding space students got the chance to try out a variety of exercises specifically designed for astronauts. We did space missions, simulations, and then we had the actual people in the capsule who are simulating flying a spaceship. You need to control your air when you're in a space suit, so that's what they do. They train by using scuba diving. They have multiple opportunities that they can actually now use what they have learnt there and the skills that they've learnt there. The week-long training camp confirmed to Xander that he was on the right career path, but there was an important calculation that had to be made before he got the green light to go in the first place. No, it wasn't an instant yes, he was going to go. We actually had to sit down and have a good talk between myself and my husband about whether or not we could actually afford it, and whether or not Xander would benefit from it in the long run. The countdown was on to come up with $10,000. There was no doubt about it. We were grabbing as many overtime shifts as we could, because again, you're fundraising, but you're still living. You still have to live and keep up with your daily, weekly bills, but still have a $1000 a month to go into the fundraiser pool. There's no other way to say why should we spend $10,000 on only one child when we've got three, but he and his brothers are worth every single cent that we could possibly need. I'm just hoping I can get to a position in my life where I can give back all that they've given to me, or even more, is what I'm hoping, because they've done so much for me. His motivation to do his whanau proud is another factor that drives his outer space ambitions. And someone like Xander at 16, who wants to be an astrophysicist... Yes, it's awesome. It's awesome to see that they want to do that, that he wants to do that, yes. I'm sure it's possible. If they work hard, they get good results. You need to put in the hard work in order to get the things you want. My mum and my dad, they get that it's a big thing to ask and it's a huge ambition, but they're willing to let me try, and they're willing to back me the entire way. Would you call him driven? Xander. Oh, crikey, I can't even say yes. 'Yes' isn't even accurate, because he is that driven. Annoyingly so, but with such a huge focus. Xander's shooting for the stars, determined to boldly go where only one other Maori has gone before. After this entire trip, my mind is made up, and I'm going to go work for NASA. That's a goal. I'm going to go work for them, whether I'm doing stuff in the science lab, helping them make or control or even build a space ship or a janitor ` I'm going to work for NASA. (EPIC UPLIFTING MUSIC) Tau ke, Xander. Thanks for joining us today, Hui Hoppers. Before we go, a big mihi to our boss Annabelle Lee and her whanau, who welcomed our newest Hui Hopper, Waimihia, into the world. E te potiki rerehua o Poutini me Ngati Awa, nau mai ki te ao e te tau. Kua hikina Te Hui mo tenei ra. The Nation's next. Pai marire ki a tatou katoa. Captions by Tom Pedlar. www.able.co.nz Captions were made with the support of NZ On Air. Copyright Able 2017